Good luck getting guidance. â€œYou are on your own to figure out what is needed and how to put a plan together in a meaningful way,â€� said Laura N. Gitlin, professor of community public health and director of the Center for Innovative Care in Aging at Johns Hopkins University in Baltimore. â€œIt is a huge challenge.â€�
Dr. Gitlin is an expert on â€œperson-centeredâ€� care for people with Alzheimerâ€™s disease and the originator of a massive open online course (M.O.O.C.) on this condition, which will be offered through Coursera for five weeks starting in mid-October.
The course offered by Dr. Gitlin and her collaborator, Nancy Hodgson, an assistant professor at the School of Nursing at Johns Hopkins, is free to anyone who wants to enroll.
and Ms. Hodgson expect about 20,000 people worldwide to do so, reflecting the concern internationally over Alzheimerâ€™s.
â€œThe point is to help people understand Alzheimerâ€™s disease from a comprehensive perspective that encompasses not only its medical implications but social, psychological and environmental considerations,â€� Dr. Gitlin
told me in an interview.
Sheâ€™s especially focused on what she
calls the â€œlived experienceâ€� of people with dementia.
Caregivers and professionals â€œneed to know about the different stages of this disease and how a person is functioning during these stages in their home, their family and their community,â€� she
Only then does it become possible â€œto develop a supportive environment that allows the person to use the capabilities he
Thatâ€™s what person-centered care is all about.
Instead of dwelling on the losses suffered by someone with dementia â€" the things they canâ€™t do any longer, the ways in which they are diminished â€" it means appreciating that â€œa personâ€™s sense of dignity, of purpose, of needing and wanting a role remains intact almost to the very end,â€� Dr. Gitlin
We often forget this, because people with dementia often arenâ€™t able to express it.
Recognizing that people wonâ€™t sit through long online lectures, Dr. Gitlin
and Ms. Hodgson have broken each class into 15- or 20-minute segments.
is developing non-pharmacologic interventions to treat troublesome behavioral symptoms and participated in writing an important paper on this topic, published in JAMA late last year.